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Tuesday, May 15, 2012

Lessons relearned by accident

I stood over Jennifer and
shouted the foulest one-syllable obscenity in the book as she writhed in pain
on the bathroom floor.

This never should have happened on my watch as her caregiver.

And as I stewed how I was
going to get my loving wife up off the floor, all she kept saying was, “I’m so
sorry! I’m so sorry! I’m so sorry!”

Me too, Jennifer. Me too.

I was angry at multiple
sclerosis and at myself because I had let my guard down. She was apologizing
because she knew I was blaming myself for this unfortunate incident and that I
was going to have to somehow get her back into her power wheelchair.

This specific moment and reality
in our life together actually started several months earlier when we noticed
the sponginess of our bathroom floor. The seal along the threshold of the
roll-in shower had started leaking water and was damaging the floor underneath
the linoleum.

Looking into our options to
fix the floor, we assessed other areas in the bathroom we needed to repair and
improve. In addition to replacing an upright linen closet that our cat, Cooper,
and Jennifer’s power wheelchair, Grape Ape, had managed to damage, there was
one major modification we had to
make.

Jennifer had always wanted to
spit into the sink.

A standard vanity made it
impossible for Jennifer to roll Grape Ape up so her knees were under the sink
and she could use it just like everybody else. With a new roll-under sink,
Jennifer could more easily wash her hands. Use the towels. Grab a Q-tip. Brush
her teeth. Spit in the sink.

Indeed, how much so many
of us take for granted.

With the vision and
construction skills of our friend Cliff, our bathroom was quickly making our
accessible dream a reality. Ah, yes. The realities of life with multiple
sclerosis. More specifically: life between two people who have MS.

After staying with Jennifer’s
parents for a few days while Cliff overhauled what likely is the most important
room in our house, we returned home to a nearly completed bathroom.

An industrial-strength fan
was strategically positioned in the room’s center to turbo-dry the grout in the
now leak-proof roll-in shower. Looking to use the bathroom, the fan’s noisy
whirr muffled our voices as I attempted to help Jennifer transfer to the
toilet.

It was a routine activity we
complete several times each day. As we always do, she put her arms around my
neck and I straddled her right leg, slightly squatted, wrapped my arms around
her back and locked my hands together. She counted, “1, 2, 3.” I helped her up,
and there Jennifer stood holding the grab bar to the right of the toilet as I
went around to guide her in the transfer.

I could tell something seemed
a little off in her stance. So I asked her, “You got it?”

She said something, but I
couldn’t quite make it out. Again, the fan’s noisy whirr muffled our voices.

“You got it?”

She said something I still
couldn’t understand, and I then watched in helpless horror as her legs melted
and she crashed knees-first onto our newly tiled bathroom floor.

This never should have happened on my watch as her caregiver.

But it did, and it painfully
reminded us of how important clear communication is between people with MS and
their caregivers, families and friends.

In this instance, we should
have turned off the fan. Had we turned it off to get rid of the noise, I would
have understood Jennifer when she was telling me that her knees were not locked
and she wasn’t ready for me to let her go to stand on her own.

As Jennifer and I have
discovered through our nearly seven years of marriage, communication goes beyond
controlling the noise in the room. Among other qualities, we’ve found communication
also includes honesty, empathy, listening and patience – HELP.

Honesty. Tell each other the truth (being mindful to not hurt each other’s
feelings) so you never spend time second-guessing what the other person is
thinking or needing.

Empathy. Always put yourself in the other person’s shoes and look at the
situation from that person’s perspective.

Listening. Open up your ears to hear and understand what your caregiver or
loved one is saying and ask questions to ensure you understand and you both are
moving forward together.

Patience. Take the time with each other to be honest, empathetic and listen.

We are both on the same team and
are doing the best we each can do to ensure we beat this disease together.

Combined Dan and Jennifer Digmann have taken on
MS for more than 25 years. Jennifer was diagnosed in 1997 and has secondary-progressive
MS; Dan was diagnosed in 2000 and has relapsing-remitting MS. They live in
Michigan and were married in 2005. They are authors of the book, “Despite MS, to Spite MS,”
(available at amazon.com), and write for HealthCentral.com and their own blog,
danandjenniferdigmann.com.

16 comments:

I too can relate to the commmunication peice. I have rrmS and sometimes when I need help I am so frustrated with myself and ms that i dont clearly communicate my needs. I get into a tizzy because no one in my life can read my mind!! LOLLOL Patience is my best ally, because I must be a teacher to my caregivers when things are askew... I have to remember that they cant read my mind and I am their teacher. THANKS FOR THE STORY!

My husband and I have been married for 6 years and there are still things that do not go so well. Luckily, my falls tend to happen when I am alone. I don't crumple to the ground, I fall flat. The 19 gumball sized lesions and the one in the brain stem get the best of me....I am thankful few people have seen the fall. I imagine a 2x4 slamming on the wood floor. I have had MS for nearly 20 years and this is not the first "cool" new thing to add to my list of random things to warn people about. As soon as the odd falls started I knew my exciting life as a Substitute Teacher was over. That and the cranky "old school" teacher did not understand that getting students excited about learning takes a day and the same old tricks just don't work. I left the career I thought I was at least going to have a chance at with that old schooler nipping at my heals like an annoying toy dog. I am a writer now. Retired at 39. Thankful nothing nightmarish happened in the classroom. I set the fire alarms of 4 times in one day and that bothered me more than having to tell the students...hey I have MS. If I do anything weird get someone and call the number on my bracelet....

Wow. Thank you so much for writing this. I feel as of this is exactly what I needed to hear. I received my official dx of rrMS in March, after 4 days in the hospital and multiple tests that confirmed what we had no idea I had. My first episode was last July, and just since February I am currently on my 3rd relapse.

Wow. Thank you so much for writing this. I feel as of this is exactly what I needed to hear. I received my official dx of rrMS in March, after 4 days in the hospital and multiple tests that confirmed what we had no idea I had. My first episode was last July, and just since February I am currently on my 3rd relapse.

Dan's story brings back one of my worst memories. I was transferring my wife Pam from her bed to the bedside porta potty and pushed her a little too far back lifting the front legs of the potty chair off the ground. The rubber cap fell off the bottom of the leg and her foot went under the leg as I lowered her and her entire weight onto the chair. Blood everywhere, because of the MS she did not feel any pain, but by the time the paramedice got there I was a basket case. And Just like Jennifer there she was apologizing to me.

I have RRMS. My husband has cardiac issues. Over the years, we have alternated being caregiver and patient with each other. Neither role is easy in the least, and you are right. Communication is key. That has taken a lot of work, many frustrating moments, even anger to achieve. It is still a work-in-progress.

I have moved into Relapsing MS. I have aides that work most day shifts, but teaching them to react to my voice, body language and fears is sometimes difficult. I've said I'm sorry too many times to count. I'm no longer married, so finding someone to love and care for me is a complete surprise ! I am blessed to have him in my life. I worry about him trying to care for me because his bones and joints are deteriorating. See, he had a steel beam fall on him when he was in the military during the Vietnam era. So Love And Sorry seem to go hand in hand. God Bless All, Lillian

Beautiful written and a great reminder about the importance of communication. I coach individuals impacted by MS. I can see myself referring to your wonderful story as an example of what it takes to manage this disease with our care partners. Thank you in advance!

I remember reading this in your book, but really needed this reminder now. The last few days communication between my husband/caregiver has been sort of strained. I think this just sharpened my perspective.

Have had similar things, worse one was first thing in the morning, callapsing, actually fainting, next thing I knew it was 6pm and I was in bed. I had no idea what had happened, had I fallen, hit my head, then knocked unconsous? Luckily my husband of 33 years home, heard the fall, and took the day off work to make sure I would wake up. The next few days I slept alot, and had to deal with all the bruises and 'goose egg' on theback of my head.Thank you for sharing your story, it hit home, diagnosed 6 years ago.

Thanks so much for sharing. I'm my DH caregiver, he's into secondary progressive and lifting is an issue when it comes to getting on and off the regular toilet. Stuff happens, we don't want it to, but I for one get tired and lifting my husband or aiding him move can be a struggle. I've had to call 911 once. Since then we've gotten a lift, and bedside commode to use when he can't move well at all. That's been a big relief for me. I know that I can do it safely. We also used briefly an appliance for the bathtub that was supposed to allow him to slide on to it while it was in the tub, and then you could lower him down into the tub and back up when he was finished, It just didn't work well in our tub. But, it has helped me get him off the floor several times. It has a scissors type action when it goes up and down and collapses just enough for us to be able to get it under his bottom if he's on the floor. Once he's on it, I can use the power switch on it to raise him up far enough for him to reach his chair. Everyday is a new day with new challenges. Thanks again for sharing and showing us we aren't alone with these problems.

I have MS and would give my right arm to have a caretaker even 1 percent as devoted as you are. I don't have a caregiver at all and I struggle with everything. But all that kept going through my mind as I read this is that you are WAY too hard on yourself. You are only human, not a machine. It is exemplary to want to abide by your HELP tips. But cut yourself some slack. Add the word OUT to HELP: Overcome: overcome your "failings", you'll do better next time/Understand: understand you are human/Tolerate: tolerate your humanity. :)

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